Tag Archives: adult autism

In a comment on last Tuesday’s post, Lori from A Quiet Week in the House had a great suggestion: “A thought for your Tuesdays–could you poll your readers? I love reading about other’s perceptions, strengths, and areas of concern. It might be a good way to help others discover coping skills.”

So what do you think, readers? Shall we have a poll?

Wait, before you answer that, let me share something with you that I’ve been wanting to say for a while now. For me, one of the most enjoyable things about blogging is reading your comments. I don’t just mean the “this is great” aspect of the comments, though of course that feels good. More than that, I enjoy when you share your experiences.

I’m just one person. Though I do a lot of research, I write from a very personal perspective. When you read what I’ve written and then share how something affects you, it’s incredibly valuable, not just to me but to everyone else who comes along and reads the post and the comments.

And lots of people do read the comments. What we’re doing here–and I really do mean we as a group–is creating a rich, detailed account of what it means to be an autistic adult. We’re learning from each other and we’re creating something for the hundreds of silent readers who find this blog looking for information on some subject or other.

The Poll

So, the poll. Do you have a question you’ve always wanted to ask other autistic people? It could be something practical like, “how do you cope with _______.” It could be something you’ve noticed in yourself and wonder if others experience. Maybe you’re curious about favorite special interests or stims or stim toys. Maybe you have a tough thing you’re facing in life and want to know if others have dealt with it in the past.

Here’s what we’ll do:

1. Leave a comment on this post with your question(s). You can post more than one question and I’ll try to include everything, but I don’t want the survey to be too ginormous for us to answer.

2. I’ll collect the questions into survey format.

3. I’ll post the survey next Tuesday and we’ll answer then. I want this to be fun and not a lot of work, so let’s plan to answer as many or as few questions as we want. No pressure.

There are two ways I can set up the survey:

If you prefer to answer anonymously, I can create a Survey Monkey survey that we can answer without revealing our identities. I can then bring the answers back here in the form of a post, with all answers kept anonymous. We may get more answers this way.

I can post the questions and we can answer in the comments. We may get more trustworthy answers with this option and we’d be able to ask follow-up questions (within reason, of course).

This morning I wrote a post about adult autism. I came to the keyboard armed with statistics. I hashed out arguments. I agonized over the wording. I framed my life in terms of the grim numbers I’d found in the research.

When I was finished, I walked away from the computer feeling unsatisfied and restless. Does knowing that 14% of adults with ASD are married or 25% have at least one friend really mean anything? We can create a composite of averages, saying this or that about adults with autism, but that composite person doesn’t exist.

The average American family has 1.86 children. Do you know anyone who has 1.86 children? Of course not. The averages are just that. Fictional composites created by aggregating data and finding the mean. Ironically, that mean often doesn’t exist.

We can’t define autistic adults using averages any more than we can have 1.86 children in our family.

Starting Over

Tonight, I did what writers do. I deleted four hours worth of work and started over.

I decided to leave the statistics to the people who really need them, the advocates and policy makers, for whom they are tools of the trade.

Through the lens of humanity, quantifying something so complex and varied is a futile undertaking. The minute we divide ourselves into those with friends and those without, those with jobs and those without, those with partners and those without, we set up a false dichotomy.

Life is a journey, not a snapshot. We may shift in and out of those categories on our journey. We may intentionally choose not to join one side or the other. We may choose not to be quantified according to another’s standards of functionality.

We are individuals and as such we can only be understood as individuals, one at a time.

As I so often do, I went to the opposite extreme in search of inspiration. I abandoned statistics in favor of Tibetan Buddhism.

If I could explain in words how I got from one to the other, I would, but the closest I can come is this: I found myself standing so close to this subject that I felt blind to the shape of it and as I struggled for a solution, shuffling through bits of ideas and images and memories in my head, puzzling out how to describe something that refuses to take a single shape, I came upon a fragment of the quote below, stored up from some long ago reading or lecture:

Click on the photo to see a larger version of the saying photo: By Ben Tubby (originally posted to Flickr as Makalu) CC-BY-2.0 via Wikimedia Commons

Like the mountain, our lives need to be observed at a distance. To take any one moment and say it defines who I am is to diminish the whole of me, the greatness and complexity of all that I’ve been and will become.

Like the mountain, the form of our lives can only be understood fully by taking stock from all sides. Look at my life from one side and it looks dull, flat, unformed. Look from another angle and you’ll find texture and depth, hidden crevices jagged with fallen rocks and outcroppings worn smooth from the battering winds.

Like the mountain, experience reveals us to ourselves. Walking through rain and snow, basking in the sun, weathering the storms, we find our strength and frailty, we form bonds with others and choose which paths to walk alone.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.